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Quality of life in end stage dementia

Uncategorized Jul 12, 2020

Welcome back, Careblazer. 


In last week’s blog post I talked about creating your own joy plan for living with dementia. This week I want to talk about how to die with dementia - in a way that you want. This is from the book Dementia Reimagined that I’ve been talking about and I want to share with you Dr. Powell’s insightful thoughts on dying with dignity in a way that you want; not just the way that others want. 


If you would like to watch my video on this topic, click here


Dr. Powell states the type of death most American's don’t want - in an intensive care unit, hooked up to various machines and tubes, being poked and observed by busy workers, sedated, tied down and suffering is actually one of the more common ways American’s die. Most older Americans say they want to die at home. But, 75 percent of people dying in hospitals are over 65 years old. 

In order to avoid this type of death, you have to be informed & know your options. Otherwise, it’s easy for your end of life care to be based on the wishes of doctors, nursing homes, and others. She says “bad care is the default” and if you want to increase the chances you can die in the way you want, you have to prepare for it now. 


I think this topic, while sobering, is important to talk about.  Not only for you as you start to age but for your LOWD. Careblazers talk to me a lot about their difficulty deciding whether or not to pursue treatments, surgeries, and various procedures for their LO. I hope this post will give you some things to consider as you find yourself more and more in the position of deciding about your LO’s medical care. 


Before I get into the details, a quick reminder that if you haven’t already, save your spot for my free upcoming live care class on how to lower your dementia caregiver stress and feel better using the Careblazer map system I created. The link to sign up is here.


Here are her thoughts on reducing your chances of spending your final years in and out of the hospital with various procedures. These takeaways are good for you to know should you find yourself in this situation and its definitely good for you to know as you care for your LOWD who continues to decline. 


One of the biggest challenges that stop people from having what they would consider being a good death is the failure for people to realize that dementia is fatal. Once someone is in the end stage of dementia, there is no way to escape that dementia will eventually take the life of someone with dementia. When we ignore or are in denial that dementia is fatal, we start to grasp at all kinds of aggressive medical interventions and procedures with the hope that it will help.  When in reality it leads to more suffering for you and definitely for your LOWD. 


There is a difference between not getting aggressive and invasive treatment and getting treatment that relieves suffering. In end-stage dementia, she recommends that the focus should be on treatments that relieve suffering and I totally agree. The goal is to make you or your LOWD comfortable, not to extend the length of their life at the expense of their quality of life. 


Sometimes, Careblazers may feel like if they don’t follow through with every recommendation or available procedure, then they are “giving up” on their LOWD. But in reality, especially at the end stage of the disease, the primary outcome of having more medical procedures is more suffering for your LO. You aren’t giving up, you’re trying to prevent unnecessary suffering. 


The author makes it very clear that the goal isn’t to stop all treatment for people with severe dementia. The goal is to focus on treatment that reduces suffering. The goal shouldn’t be to prolong their life at the expense of their quality of life. I haven’t seen specific research on this, but I’m willing to bet most people with dementia don’t want to prolong their life.


Would you want to prolong your life if you had severe dementia or would you want to be as comfortable and pain-free as possible?


She used several examples of doctors saying your LOWD needs_____ treatment, or they will die. A feeding tube for example.  She mentions that type of reasoning is never a good enough reason to pursue treatment for someone in the end stage of dementia. Your LOWD is going to die regardless. Instead, encourages you to ask how and if the treatment will get your LO closer to the death they want. 


Essentially, she recommends that EVERY treatment for someone who has end-stage dementia should lead to comfort. Declining some of the other medical interventions you will be offered may be the kindest thing for your LOWD. 


Careblazers, I know this isn’t an easy topic, but I hope it gives you a new lens to view things when it comes to pursuing various treatments for your LOWD. 


The link to the book I refer to in this post, Dementia Reimagined is here


I’ll be back next week with another topic and I hope to see many of you soon in my upcoming live class.


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